site.btaBulgaria Marks Rare Disease Day on Last Day of February

Rare Disease Day has been observed on the last day of February (on February 28 or 29 depending on whether it is a leap year) since 2008 on the initiative of EURORDIS – Rare Diseases Europe. On this day, people living with or affected by a rare disease, patient organizations, politicians, carers, medical professionals and researchers organize campaigns to raise public awareness about rare diseases.

In the European Union, a disease is considered rare when it affects less than 1 in 2,000 people. There are more than 8,000 rare diseases, which affect around 300 million people worldwide.

This year the events on the occasion of the Rare Disease Day started on February 15, with a March of Hope organized by the Rare Diseases Bulgaria Association in Sofia. Its goal was to raise awareness about the challenges faced by patients with rare diseases, as well as to draw public and institutional attention to the need to establish and financially secure a National Programme for Rare Diseases with a horizon of 2035.

Nearly 370,000 people live with rare diseases across the country. They face daily challenges related to access to treatment, social integration and professional realization, the association reported.